The impossible dream-Who would you be if you didn’t have migraine disease?

In another piece I wrote for Migraine.com, I talked about the to-do list my Migraine Self creates. The list—whether written down or, more likely, imagined only in my mind—consists of things I want to do as soon as my migraine lifts and I feel better. Think of chores, errands, simple pleasures, and more that you can’t do while ill but look forward to doing once you’re better.

There’s a more complicated and potentially somber side to this type of daydreaming, though. It’s the most impossible dream of all because, to use a cliché, life is not a dress rehearsal and we don’t get a chance to re-live it. Every day, every month, every year stolen by migraine and chronic health problems is a day, a month, a year we will never get back.

Keeping all that in mind, I can’t help but wonder this: Who Would I Be If I Didn’t Have Migraine Disease?

Let’s face it, everyone. I think we’d be hard-pressed to find someone with chronic illness who hasn’t daydreamed about what he or she would be like were it not for his or her health issues.

I watch good friends of mine, friends who are very similar to my healthy self in so many ways. One friend in particular, R., is a dynamo. She has multiple jobs, is always volunteering, has these awesome kids she is a fabulous mother to, keeps her huge and lovely home clean, stays positive, exercises, writes, and more. She is an amazing force to be reckoned with. When I’m feeling healthy and energetic, I am like her in many ways—I am upbeat and positive and shout an over-eager “yes!” whenever I’m asked to do something (even if it’s to my detriment or if I don’t have the time!). But, unlike R. and my other, healthier friends, I am very often hit with a migraine. I cancel the volunteer meetings and I have to turn some yeses into nos. I simply cannot be the person I have tried to be.

This begs the question: Who would I be without migraine disease?

I don’t believe I’d be some amazing specimen of a woman, someone whose life is well-balanced and ever-peaceful. I know my core self would remain much the same. But would I be even more confident, knowing that migraine couldn’t waylay me and stop me from doing what I set out to do? Would I be even more social, saying yes to parties and weddings more often because I wouldn’t have to worry about being stuck in the car or in a hotel room holding a cold washcloth to my head? Would I be the life of the party, drinking and dancing til the late hours because, apart from tiredness and a run-of-the-mill hangover, I wouldn’t have that inevitable crappy day after completely lost to a migraine attack?

What do you daydream about? Who would you be were it not for your migraine? Who would you want to be, and who—realistically speaking—would you really be if you were migraine-free? I understand that, for many people, this can be a heartbreaking thing to think about, so please know that I don’t ask this to get you down. I just thought it’d be helpful for us to all talk about this issue and be listeners for one another.

Now…who will comment first? The rest of us are listening.

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Comments

If I did did not have 40-50 migraines a month?
– I would still be working. My job was eliminated in July.
-I would just like my old life back: my husband and I worked together as a team. We both worked. I did the housework while he cooked. When we went camping we set up camp together. We entertained a lot and went to friend’s houses.
Now I am sick every night so I do not leave the house after 4 pm. Actually, since losing my job I seldom leave the house unless I have a doctor’s appointment- and then my husband takes off work to go with me. I no longer drive and my husband (and my family) are afraid for me to take the train by myself, so I can’t visit my parents, whom I love dearly.

I think this is a tough subject to view objectively without getting down. I used to make close to six figures, now I am making Mcdonalds wages. I have lost friends, jobs, boyfriends due to this disease. When the migraines descended at age 26 I was energetic, carefree, funny, smart and had a huge drive. I was one of the first people in my extended family to get a bachelors degree and have an important job. Now I feel a shell of my former self – I get migraines 5 days a week and they last from the moment I get up to the moment I go to bed. While they may not kill me, I am sure that the truckloads of medication I take will. You know you are not supposed to take more than 2 doses of triptans a week, and I take 3 times that! So, yeah, this is a hard question. Sorry, no sunshine today.

” used to make close to six figures, now I am making Mcdonalds wages.”

I know exactly how you feel. I’m unemployed right now. I went back to school to finish both my computer science and engineering degrees. I STILL can’t find work because even in a field where flextime and telecommuting should be the norm. Employers don’t want to accommodate disability even for someone with heaps of experience.

I have worked for well known tech companies and made close to six figure incomes. I have traveled overseas to train new labs. There is no way I could even think about going to China or Taiwan now. The thought of being in coach or even business class for 17 hours terrifies me.

I have often thought about this. I would be the multi-tasking, on-the-go girl that I was before I got hit with migraine at 20 years of age. I am now 40 and otherwise in great health and I still believe that I would be achieving a heck of a lot more if it weren’t for this disease which I can only describe as a weight on my shoulders that keeps me two steps back from where I should be. I don’t think that I would be anybody else in particular, but I would be a better version of what I am now.

I would have had much more fun as a teenager. I am 63 now & have chronic Migraine. I always felt I couldn’t really enjoy myself as I felt lousy. Until imitrex came out I was at the mercy of help from fiorinal which never really did much. As an adult I am often ill w a migraine that imitrex relieves usually but I know I take more than I should. It has become my lifeline. I have tried over the yeears all the preventatives out there to no avail. I think w all this in mind my life would have been much easier & I could have done more w my life. However I am so thankful that I was able to grow to be very compassionate to anyone in pain. I was able to get my nursing degree & worked many years as a pain management nurse at a local hospital. It was the most loved of all my RN positions as I felt a real calling after dealing w the pain of migraine all my life. God has found a way to see me through so I was able to give back.

I would have graduated from college much sooner and I would be settled in a career or at least I think I would.

The current economy makes that hard to predict.

I can say that my migraines made it VERY difficult to get through college when I was younger and didn’t know about ADA. I am doing it now at 45 and it has taken three tries. Sadly, the financial hit has been difficult and I’m doubtful I’ll find work even after I have the second degree in engineering.

I MIGHT still be married but considering that he divorced me pretty much because of migraines? He probably would have found “something else.” Took me awhile to reach that conclusion though. Too bad he had to tear through my family with complaints before we divorced though. I might have been able to salvage my family if I didn’t have migraines or if I hadn’t married him. I usually play the what if I hadn’t gotten married game! (more damaging, trust me)

What a great question! I have to say that although I have suffered with chronic migraines since I was 15 (I’m 60 now!) it has been quite a ride so far. My migraines became more severe and frequent in my 30’s when I battled infertility and took hormones to no avail; which still have left me with far more episodes than previously. Plus several years later I was diagnosed with MS, and later still with celiac disease.
I am mentioning this because of two great factors that have enabled me to get several degrees, raise two beautiful daughters, have many exciting careers, explore my artistic side and build many friendships all over the globe…
The first factor was Imitrex. Yes starting this injection 23 years ago and subsequent prophylactic meds gave me back the opportunity to live a life. I am very fortunate to have smart doctors prescribe these meds and the system to respond to them.
The second factor is the drive to want to go out and do whatever I want to do. Yes, when I was in investment banking I was “grounded” for months because I was vomiting my way through airports… yes, when I was in grad school I had to sit with compresses and a garbage can beside my exam table when I took tests with migraines… yes, when I adopted my younger child I nearly missed her court date because I hadn’t recovered from a 36 hour migraine… and yes, I get celiac reactions many times my meds are delivered generic with gluten and I cannot take them until I go through a few days wrangling to go back to “brand.”
But life is only here for us once! We have to do whatever we can lessen the pain and the episodes, and Live, Love, Give, and enjoy….
ps.. and yes, parts of my house are messy too!

I used to do photography and make cards and do many more crafts. Now my camera sits idle (except when my son “plays” with it – a really expensive toy!) and my well organized craft section of my office sits unused, blocked by all they junk that gets dumped in there.

The rest of my life – a disorganized mess. I couldn’t even fill out the health form properly for my son to do Boy Scouts today. I don’t have his vaccine record – though I do know he’s “up to date” – at least I’m a good mom that way. Papers are rarely filed, I have boxes of “to sort” papers, and finding important stuff is a good luck chance.

So I guess my dream would be – I’d be organized. I’d get out that camera that I loved to use for 20+ years, and I get back to doing my crafts that help my mind stay creative. Then maybe once I got my creativeness going again for my pleasure, I’d get a fresh start at work and try to improve my position there.

I’m pretty young to be feeling this way, I just turned 22, brought in my 22nd birthday with a migraine.I am a student in the middle of my 4th year of college. The worst of it was when I was 20, most days I couldn’t even get out of bed, silently suffering about 90% of the month. It was to the point teachers were pushing me forward to get a passing grade after spending endless hours with them trying to relearn the material I missed. Not a day goes by where I don’t remember their faces and I thank them for believing in my illness. Without their grace, I would have been a college drop out. I’m beginning to fall back into a life of continual pain, when I finally repaired my broken GPA, felt like I beat chronic migraines, and found my calling in life. I have goals to get my phd in neuroscience and I plan on budding up with my professors before graduation to enlighten me with experiences of the things I so much love. Lately,I haven’t been myself. I’m spiraling out of control and I don’t know if I can ever accomplish getting into grad school, or even accomplish what I love to do, and be successful at it. My college career has been a struggle to pass and a disappointment to myself knowing I could have done it better. I worry with each passing migraine I’m one step closer to being that college drop out again, or never being able to see a future career. I have goals to clear a path for someone who suffers with brain abnormalities, but really I think I’ll be the one waiting for someone to help me.

Thank you TMG.
Since I’ve been a chronic migraine sufferer for a few years now, my life went from being an occasional migraine sufferer, increasing to a state of now being in daily pain as a cluster migraine suffered with the start of the attack being on the 2nd May 2012. A year later I was still off work with daily cluster migraines and desperate for any relief.
I lost my freedom as a driver on the 2nd May 2012 too.
As my attacks bought with them visual auras with depth perception problems.
Then a year from my first sick day I was told that they couldn’t keep me on the payroll anymore and that I would be dismissed under ill health retirement.
It was a professional job I got two years before, no way could I have imagined such a fabulous, dream job that I did full time and two years later I’m lucky if I can make it out of bed, and if I do its only time before I am back in it in agony.
What would I have been, my dream. I had my dream. My dream job, family and a future and now I am nothing… Blessings and thank you x

Angelina, My heart breaks to hear your story, and the others, too. I”ve been like you for much of my life. Its been 39 years now. Right now I am doing better. I believe its the tizanadine(zanaflex) 3x day for chronic migraine. Look it up. Its a recent study. But who knows? It may stop working any day with my luck. But I REMAIN HOPEFUL always that tomorrow may bring me a new life; the life I was finally able to accept couldn’t be. Nothing has worked for me, not triptan shots, botox, nerve ablation surgeries in my c2-c7 (neck). I stay home with my house plant addiction, phone calls to caring friends, and I have my house cleaned by some nice folks. I treasure those who care deeply about me,(but cannot even make a date for them to visit me). I overuse the internet since it can bring on the pain or worsen it, but I enjoy it so much. I have never stopped trying to find the best neuro within distance someone can drive me to. Have you tried the inpatient head pain program in Michigan? I flew there by myself. Never stop looking for help sweetheart, and to everyone else who reads this. Leslie C.

Not only to I live with Migraines I live with Parkinson’s Disease and Fibromyalgia.Triple WHAMO!!! So Boy do I daydream!! But don’t get me wrong, I do what I can, when I can. My husband also has Parkinson’s (we met because of it). One of those silver linings. But as I currently sit in my “Bat Cave”, the bedroom darkened cooled and blanket over window to keep out light, because it is day 6 of migraine… Yeah I daydream. I think probably like many of us it is a very simple daydream… just to live out THERE… As the holidays approach the fear creeps in, am I going to be able to go shopping, am I going to be able to decorate the house, am I going to be able to bake cookies or even participate… Those are my daydreams!